Mum was diagnosed with Rhumatoid Arthritis approx 2.5-3 years ago. She is now treated by Retuximab Infusions, but previously had Methatrexate. Her breathing has been bad for many years but deteriorated since the RA, so she has been referred to a specialist at a Centre for Excellence - this appointment is in 10 days time.
In November last year Mum was hospitalised following flu like symptoms that left her breathless. During this stay her Dr said she had COPD/Fibrosis and discharged her after 10 days on 10litres of o2 for 4 hours a day. - no follow up care arranged.
She has continued to deteriorate and struggle with her breathing, so, concerned about her I brought her to stay with me. I was able to monitor her o2 levels on an oximeter after bringing one home and was horrified to learn her average was 84%. I phoned for advice and this led to her being admitted by ambulance. 4 days on she's still in hospital but this time we have been told that she has ILD, probably caused by the RA, and that this was diagnosed in Sept 2015, though this wasn't communicated to my Mum. She has a new o2 prescription of 4litres 24/7. Her typical stats are 80/65 BP, and 87% o2 levels.
Her breathing is not improving. When she's sat, it's manageable but as soon as she moves her hands go blue and her breathing is awful.
Is there anyone else out there who can identify with Mum and I s this typical of someone who is 'living with ILD' or someone who is 'deteriorating '? Honest and to the point responses would be appreciated.
Thank you
Written by
Cazchapp
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Have you looked to see if there is a British lung foundation group near you for support, or been on the Health Unlocked British Lung Forum? They might have more direct experience they can offer you? Even tho' your mum most likely has the autoimmune version of pulmonary fibrosis, I think there's quite a bit of cross-over with the other variants under the overall heading of ILD so may be able to give you some pointers.
Hopefully some of the people on here who have COPD, or auto-immune pulmonary fibrosis will pop up soon. It is one of the things about these disease that I find the most scary so I hope the specialist appointment goes well for you both.
Thank you so much for taking the time to reply and for your signposting. I will follow that up. Yes, we are worried sick, but also incredibly angry at the apparent lack of care for my Mum, it seems she has been let down by her GP and by the relevant hospital Drs.
Yes I think I'd be angry too. And it often seems to happen to the nicest people who don't like to make a fuss, and are hesitant of asking questions as they trust their doctors to do the right thing!
Fortunately for Mum I don't lie back and just accept easily, I'm like a dog with a bone trying to get the best advice and care for her. I have a lot of questions for her consultant when we see him in 10 days time and I'm looking for answers.
I sort of do and am sympathetic as I too have a related auto immune lung condition but not COPD, it my view its one of the reasons that so called cures by diet ignore as RA does not just affect joints and cause pain and swelling it can have an effect on other areas of the body. I've been very fortunate and can't praise my GP, RA consultant and nurse and the local hospital enough. I'd advise you to talk to NRAS directly and if the practice has another doctor go to them. I'd also ask for an appt with her consultant before the next 10 days as she's in hospital now and get her consent to you looking at her medical records too as it might be that they simply can't talk to you because of confidentiality. I don't know anymore because I've been treated well but I do really hope that she is feeling better soon.
Hi Cazchap, Sorry to hear about your Mum she must be wondering what is happening to her, But at this level you must keep asking questions and get answers from both sides, Get the R,A. and Pulmonary Consultants and ask what treatment they recommend and inform the other one before you commence as one R.A. treatment maybe not be agreeable with them,
I have both conditions IPF & RA and I am on the Active list for a double Lung transplant and I am sure I can offer some help or advice, You sound a strong person as my Wife Fran is she is like a dog without a bone till she gets the answers she wants, Please feel free to ask anytime I seldom sleep due to my RA, Mattcass
Hi, my mum is back in hospital and now being treated for Pneumocyctis Pneumonia. Drs have attacked it with intensive treatment and have said that if no improvement in 24/48 hours then we should consider a DNR order. Can anybody identify with this please?
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